5613386 CELEBRATING THE SICKLE CELL DISEASE WORLD DAY ON JUNE 19TH AFTER TWO YEARS OF PANDEMIC: MY LIFE WITH SCD, PATIENTS’ PERSPECTIVE
Authors: J.E.M. Maran, M.P.D. Perdibon, I.B.D. Baido, M.N.G. Nkongne Gyslene, F.C.N. Canonici, V.M.N. Munaretto, G.R.G. Reggiani, A.B.F. Biffi, L.S.N. Sainati, R.C.L. Colombatti
Journal: HemaSphere (2023)

Jackeline Elizabeth Maran1, Marina Perdibon1, Ilaria Baido1, Michel Nkongne Gyslene2, Fabrizio Canonici2, Vania Munaretto3-4, Giulia Reggiani3-4, Alessandra Biffi3-4, Laura Sainati4, Raffaella Colombatti3-4 1Fondazione Città della Speranza Onlus 2Associazione Malattia Drepanocitica 3Dipartimento della Salute della Donna e del Bambino, Università degli Studi di Padova Background: After two years of COVID in which activities were reduced due to the pandemic and each one’s life was affected by restrictions and limitations, the Sickle Cell Disease (SCD) Association in Padova teamed up with the Sickle Cell Group at the Pediatric Hematology Oncology and Bone Marrow Transplant Unit to celebrate the Sickle Cell Disease world day by organizing an online meeting with children/youths and their families. Theme of the meeting was: “My Life with SCD: poems, pictures and writings express our view on disease and care”. Aims: One of the goals of this meeting was to create an opportunity for individuals with SCD to meet and have a constructive discussion with each other about the disease and express their feelings after two years of pandemic. Methods: One month before the meeting children, teenager and parents were asked to sharer with the organizing team any drawing, painting, poem, writing, that they felt could express their feelings or experience of the disease itself or how it affected their life, or their experience in the hospital. The materials received were organized in a power point presentation and At the meeting, families were able to see a PowerPoint presentation with the poems, drawings, writings. Each author had the choice to personally share their production or have it read out loud by a member of the team. Free time to comment or share experiences was given. Results: 20 children, teenagers and parents participated. Countries of origin (Nigeria, Ghana, Congo, Albania, Italy), religious background (catholic, muslim, no religion, other) were different as well as disease genotype (HbSS, HbSC, HbSB°), severity or treatment received (Hydroxyurea, transfusion, Hematopoietic stem cell transplantation -HSCT, none). Drawings and writings regarded experience with the disease (mechanism of action, admissions), feelings experienced (fear, hope, light at the end of the tunnel), aspirations (sports) and gratitude (to the social and medical team, to parents) (Figure 1). Surprisingly, families who had a child having undergone HSCT, reported on the need and importance to talk about this experience for years after the event and made a request of a support goup. Finally, all families underlined the need to meet again soon to discuss together issues related to personal experience with SCD, even via web. of discussion with each other and with the drepanocytosis group; and that throug the online telematics platform it is still possible to involve all families, listening and trying to comfort them on doubts and perplexities about the disease, In conclusion, it can be said that after two years of pandemic, in our setting, online meeting can help patients and families reconnect with each other and activities can be planned to aid experiences and feelings. Patients’ associations and Health Care Teams can collaborate in this area.Figure 1:: Poems and drawings on “My Life with Sickle Cell Disease” by children, teenagers and parents from the Associazione Malattia DrepanociticaReferences 1. Colombatti R, Casale M, Russo G. Disease burden and quality of life of in children with sickle cell disease in Italy: time to be considered a priority. Ital J Pediatr. 2021 Jul 29;47(1):163. doi: 10.1186/s13052-021-01109-1. PMID: 34325732; PMCID: PMC8323323. 2. Osunkwo I, Andemariam B, Minniti CP, Inusa BPD, El Rassi F, Francis-Gibson B, Nero A, Trimnell C, Abboud MR, Arlet JB, Colombatti R, de Montalembert M, Jain S, Jastaniah W, Nur E, Pita M, DeBonnett L, Ramscar N, Bailey T, Rajkovic-Hooley O, James J. Impact of sickle cell disease on patients’ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY). Am J Hematol. 2021 Apr 1;96(4):404-417. doi: 10.1002/ajh.26063. Epub 2021 Feb 25. PMID: 33264445; PMCID: PMC8248107.